After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.
I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.
I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.
In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.
I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.
Rag and Bone Shop of the Heart 
Ooh, I wish I was going to California! I hope this doc gone give you some support and wish you all the very best with your travel plans. Slow and steady! 🙂
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I don’t know if you should wish for where I’m going in California. I was told Torrance is the armpit or L.A. 😉
Slow and steady is what I’m shooting for. Going to really try to unplug and relax. Thank you for the support!
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Well, armpits have their uses and it’s a lot closer than here! 😉 All the best. 🙂
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WONDERFUL NEWS! LOOKING FORWARD TO HEARING HOW IT GOES. I DOUBT I’LL EVER FLY AGAIN BUT WOULD LOVE A TRIP TO MY MOUNTAINS–JASPER WAY. U HAVE WONDERFUL SUPPORT, FOR SURE. I’LL PRAY FOR SUCCESS IN YOUR ADVENTURE AWAY FROM HOME! I’VE HAD 3 FALLS THIS SUMMER–FEEL LIKE A DRUNK!! LAST TIME INTO OUR BIGGEST ROSE BUSH; I WASN’T HURT BUT BROKE OFF SOME BRANCHES & POOR LARRY HAD AN AWFUL TIME GETTING ME OUT OF THERE! OH MY–WE DO LIVE INTERESTING, ALTHO MOSTLY BORING LIVES WITH CFS!!
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BJ, do you think it’s wonderful news? That makes me feel better. I thought you might say, YOU’RE CRAZY! STAY HOME AND REST. 😉
Why are you falling? Is it from dizziness? Please be careful! We have to stay healthy in every respect we can and that means no broken bones or sprained ankles! X
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I KNOW–I’M SURE I HAVE A GUARDIAN ANGEL PROTECTING ME. MANY FALLS SINCE I GOT CFS–NO INJURIES. ORTHOSTATIC INTOLERANCE, I GUESS OR SHOULD THAT BE ORTHO ”CONFUSION”?? THE BAD HIPS MAKE IT WORSE! AND I SHOULD BE CARRYING A CANE!
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I wish all the best to you in this exciting and scary adventure! And I’ll keep my fingers and toes crossed that you get the help you deserve. And I will demand that the chronic illness gods allow you a safe trip with the best health possible!
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Thank you! I know you are experienced at railing at the gods, so I’m in some good hands. 😉 I appreciate your being there for me. X
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good luck! i will look forward to hearing about how your visit with the new doctor went!
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Thanks, Linds. I hope I’ll have the energy to write a detailed account. 🙂
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we are on a remarkably similar path. You’re a bit ahead of me.
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Michael, really? I’m so sorry you are on this path, too. Are you going to see Dr. Chia?
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Sometimes you just have to go for it and that is exactly what you’re doing. Congratulations!
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You’re another one that really, REALLY inspired me with your travels. Not only to the POTS clinic, but Mexico and even Mayo. You just do it. Thank you for giving me a bit of bravado. X
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Yay I embody the Nike slogan! 😊
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Road Trip!!!! Very best of luck 🙂
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Ha! Trust you to put the happy, excited spin on it. 🙂 I still need to internalise some of that spirit, keep it up. X
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🙂 xx
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I felt the same way when I made the 600 mile round trip to London on my own on the train last year, when the furthest I’d been in 20 years was thirty miles up the road! Got to be honest I felt dreadful the first night and thought I couldn’t possibly carry on, but adrenaline does get you through and I’m so glad I got to see the Consultant – his diagnosis of MCAD and HIT changed my life. Wishing you all the luck in the world – we’ll all be thinking of you xx
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I’ll never forget reading about your trip to London. I couldn’t believe you were doing it and it made me realise how resilient we are. It was really inspirational. Thank you for the support! X
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Wow best of luck to you!
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Thank you so much!
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How terrifying and yet exciting. I’ll hold positive thoughts for safe, easy travel and a productive visit with Dr. Chia.
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Thank you, Trisha! It is terrifying. I never knew how complex traveling would be with complex illness. Thank you for holding positive thoughts, that’s a lovely way to phrase it. 🙂
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E-M, I really hope you find the travelling OK and the appointment itself goes well and it’s worthwhile! Sending big huge!
Hayley-Eszti.
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H-E, thank you! You were inspiring traveling back and forth to Spain, so I’m hoping I come out the other end as well as you did (so to speak). Hope you are well. X
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[…] may remember last year how I battled between going to see Dr. Kogelnik or Dr. Chia in California and ultimately chose the latter (and […]
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